Float Like a Buttahfly

Tuesday, June 27, 2017

Note: This piece comes at the request of the Arthritis Foundation. I was asked to write about my experience with its Ambassador Program, and my success with one of our recent tasks. I am honored to have been asked, and hope the following does the program justice. For more information, visit arthritis.org/advocate/ambassador-program.

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Nearly
10 years ago, I began feeling a variety of symptoms that didn’t seem to make
much sense: I was exhausted and sore without doing anything strenuous,
frequently weak, dizzy, and nauseous, I couldn’t sleep. I soon learned about a condition called Fibromyalgia, but it took 4 years and a dozen doctors before
one believed me and diagnosed it. Over
that time, I developed new symptoms, including skin rashes and painful swollen
joints. It took another 4 years of
rotating misdiagnoses before my doctors realized that this inflammatory
arthritis was part of a disease
called Sarcoidosis. These
illnesses have taken so much away from me: I’m no longer able to work, I have
to walk with a cane for short distances and use a scooter for longer ones, and
I have to cancel more plans than I can keep.
But the Arthritis
Foundation has given back so
much.

It’s
empowering – and invigorating – to see that even when my body won’t work the
way I want it to, my mouth (and my typing fingers, when my hands don’t hurt too
much to send an email) can still get things done. Not just little things –
important things!

Sunday, June 25, 2017

Note: This piece was originally written in response to the following writing challenge, offered by The Mighty:We often read comments in
our community about people worrying their condition will prevent them from
being in a relationship or finding love, even if that’s not truly the case.
What would you say to someone else with your or a loved one’s diagnosis who
also feels this way?

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Back
in college, I dated the wrong boy for far too long. He seemed to feed off of every insecurity I had,
and even gave me some new ones. While I’ve
mostly overcome all that and rarely give him a second thought, there’s one
thing he said that has stuck with me all this time. One thing that has become my greatest fear,
my greatest insecurity.

“You’re such a drag, always sick all the
time.”

As
a (then) English major and (later) English teacher, I focused in on that
language. He didn’t say that it’s
such a drag that I’m sick all the time.
He specifically put the negative, the blame, the drag on me. As if I could
help it. I wasn’t deserving of patience
or sympathy because I was suffering; I was made to feel worse because it was
bringing him down. I
was the problem. And that was before I’d
even developed the chronic illnesses I now have. Eventually, I realized that he was not good
for me (for at least 100 other reasons), and got rid of that boyfriend … but
his words remained buried deep within.

Once
I’d gotten rid of him, I renewed a friendship with an old boyfriend who would
eventually become my husband. My kind,
caring, supportive husband. He’d been a
friend since childhood, and seen me through the highs and lows of all aspects
of life … so I always knew I could count on him to be there when I needed. Still, when I started to get really sick, my ex’s words haunted me
again.

Thursday, May 18, 2017

A
friend of mine recently posted an interesting quote on Facebook. Now that’s certainly nothing to write home
(or write blog) about – every day we see dozens of quotes meant to make us
think introspectively for a second and then keep scrolling. Usually, we skip the introspection and just
scroll on. Occasionally we comment and
move on, but the point is that no matter what we do, we scroll past it and
don’t give it a second thought. I made a comment – half joking/half sarcastic, and scrolled
on, as we’re supposed to do. But this time, it stuck with me.

"You are the average of the five people you spend the most time with."~Ok, that's my husband, my mom, and probably 3 doctors.

Ha
ha ha … it’s funny ‘cause it’s true.

But
that’s precisely why it’s not so funny.

I
tried to think about it more, and come up with a real answer. Surely there are people I spend more time
with than my doctors … right? I mean … I
do see a lot of doctors, but there has to be more than that … doesn’t there?

When I couldn't think of anyone else I spend time with, I went to look at my calendar, hoping I'd find that I have a real life, with real friends and real activities.

Eh … not so much. It’s actually been a busier month than usual, though, so there was more than I expected:

Monday, May 1, 2017

It’s
Arthritis Awareness Month! This is a big month for me – not only does
this month focus on multiple conditions that I have, but it does so with the
support of multiple organizations that I volunteer with. So without further ado, let’s talk about
arthritis!

For
starters, the most important thing to be aware
of is that arthritis is an umbrella term that covers over 100 different
conditions. Yes, that includes your
grandmother’s bad hip – that’s osteoarthritis
(OA), a degenerative joint disease caused by wear-and-tear. But it also includes things like carpal
tunnel syndrome, gout, and rheumatoid
arthritis (RA). And
then there are my issues.

Back
in 2007, I started feeling like something was wrong, but I couldn’t quite
pinpoint what it was. My body ached
everywhere – a deep, immobilizing pain as if I’d just done an intense workout. I felt an indescribable fatigue that no
amount of sleep (or coffee) could defeat.
I had headaches and stomach aches daily, and often felt dizzy, nauseous,
and weak. In 2008 I was sent to
countless specialists for countless tests, but the doctors had no answers for
me. They suggested I was “just
depressed” or worse yet, making it up. After
two separate nurses (parents of clients, not actually treating me) suggested
that it sounded like fibromyalgia, I
began to do my own research. The more I
learned, the more I knew that those
two nurses were right. Still, the
doctors continued to dismiss me, to disregard my suffering and deny my pleas
for help. It took another four years before I was officially
diagnosed with fibromyalgia. Treatment
does reduce the symptoms a bit, but what meant more than anything was the
validation that what I was feeling was real.
That’s why Fibromyalgia
Awareness Day (May 12) is so important – it lets other people
suffering with this condition know that they are not alone.

As
bad as it is, I wish I could say that fibromyalgia was my only ailment. Sadly, it rarely acts alone; fibromyalgia
patients often have a number of overlapping
conditions. In 2011 I developed new symptoms: unbearable pain and
swelling in my feet and ankles, and rashes on my legs. Though these didn’t fit with what I was sure
was (still undiagnosed) fibromyalgia, they were visible, which meant the doctors could no longer say it was all in
my head. I was told it was “some kind of
arthritis,” that it was autoimmune/inflammatory, but the doctor didn’t know
exactly what type. Over time, it
progressed, so that my hands often swelled and nearly all joints became
painful. It took another four years of rotating misdiagnoses and failed treatments
before we finally figured out that the inflammatory
arthritis and other symptoms were part of a rare disease called sarcoidosis. Like with fibromyalgia, the confirmation of a
definitive answer after years of only questions was a huge relief. Also like with fibromyalgia, the treatment
helps to alleviate the symptoms somewhat, but I still have pain and fatigue
every day, and a bad flare can knock me out of commission for days or weeks at
a time.

Saturday, April 29, 2017

I
have always been a positive person. I’m an
eternal optimist, always holding on to hope, always looking to focus on the
silver lining no matter how cloudy life gets.
Sometimes I put pressure on myself to keep that up – partly because I
just prefer it to being sad, partly because I feel like a hypocrite when I don’t,
and partly as a matter of self-preservation.
Even (or especially) since illness has become such a big part of my
life, I find reasons to keep my smile, things to be grateful for daily. I feel like I'm supposed to say I’m lucky, it’s not that bad for me …
not compared to the others.

When
I was finally diagnosed (after 8 years of trying to figure out what was wrong),
I googled Sarcoidosis and the first
thing that came up was the Bernie Mac Foundation: started by his wife after he
DIED from this disease. I haven’t died,
so I’m lucky, - it’s not that bad.

In
the online groups I frequent, I see post after post about people hospitalized
due to their illness. I haven’t been
hospitalized, so I’m lucky – it’s not that bad.

At events I’ve attended, I’ve met people who must travel with
portable oxygen tanks. I haven’t
required oxygen, so I’m lucky – it’s not that bad.

A
friend of mine was misdiagnosed with lung cancer and treated with toxic
chemotherapy for years before being correctly diagnosed with sarcoidosis. I haven’t been misd- … well, I haven’t
been misdiagnosed withcancer (RA, Lupus, Psoriatic Arthritis,
Still’s Disease, and Undifferentiated Connective Tissue Disease, but not cancer),
and I’ve only had low-dose
chemotherapy treatment, so I’m lucky – it’s not that bad.

I
feel like I’m expected to say that I’m lucky because it’s not as bad as it
could be, or as bad as it is for some others: I haven’t died or come close to
dying from my illnesses. But is that really the standard we should use for “luck”? Yes, I’m grateful to be alive … but lucky?

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.